"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘EDS’

I have been quiet on here but our life is not at the moment. If that sounds slightly ominous, that is because it pretty much is. *Sigh* I will go into detail soon…

I have several posts I need to write and get up in the near future, but I want to take a few minutes and share this exciting (to me at least) information now. I recently wrote an article for the Complex Child E Magazine that was published in this month’s edition. The September edition is Bone, Muscles and Joints and that seemed a perfect opportunity to share info about EDS and raise some awareness. The article is basic information about EDS and explains why early diagnosis is so important. My goal was to pack as much detail about EDS in as possible so anyone who was not familiar with it would come away informed and more likely to connect the dots.

I had never heard of this website previously, but I am glad I have and I am happy to share it here as a useful resource. I think it is a great resource for parents of medically complex kids – there are many articles there by parents and even by kids themselves. Lots of great information and I encourage you to take a look at the many helpful articles there. And, I would also encourage you to consider writing your own article and submitting for inclusion in a future edition. (The editor, Susan, was a pleasure to work with so don’t be intimidated!)

I hope you enjoy it and I feel fortunate to have had the opportunity to have educated others about EDS! If you want to come back and leave a comment with feedback about the article, that would be awesome!

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I wanted to post a bit how Em is doing since we have been making serious (and amazing) progress recently.

First, the Neurontin is helping immensely. Even on a low dose (200 mgs 3 xs a day) she is getting significant pain relief. Her pain levels have gone from a typical 8 or 9/10 to a 1 or 2/10 on the pain scale. It is pretty amazing, tbh. She waited a long time but finally has real pain relief. As a result, she is much more active than previously – she is up and around, walking more and using her wheelchair much less. She gets dressed everyday and in general is living again. That isn’t all credited to the neurontin – it is more of a thing that all of the stars aligned but the neurontin is an important ‘star’. We see the pain doc next week but we are finally getting to a really good place and it feels so good.

The other pharmaceutical players in the line up are amitriptyline, flexeril, aleve, tylenol (only occasionally as needed now), and, of course, Diamox and zyrtec/zantac. The amitriptyline has helped her sleep improve immensely, the flexeril helps with the muscle spasms, aleve is prescribed by Dr. T for inflammation and joint preservation. The zyrtec and zantac (mast cell treatment) has been pretty amazing as well.

The Diamox (which deserves to be singled out on this list) has continued to brilliantly control (eliminate) the high pressure headache, blurred vision and has even reduced some of the dizziness. It has been amazing and it has literally changed her life. (Check out the Driscoll Theory if you haven’t already. Link to Dr. Diana’s web site is on the right side of this page.)

Her foot injury is better – certainly did not get too bad with RSD like we feared. Starting the neurontin (coincidentally) when we did might have helped to nip the RSD in the bud and we are very relieved that it didn’t become a big problem. By the time we got to PT, her foot was considerably better – which happens sometimes. Chuck, our wonderful local PT, took that in stride. Basically, he asked us what we wanted to do – ‘we have some latitude here, ladies.’ So, we talked about it and decided to do some water therapy once a week for a month or so, with the goal of getting to the Y pool on a regular basis. She has had 2 sessions in the pool with Molly and has done really well. We were worried that she had deconditioned so much that water therapy would be even harder than normal – and it is challenging even in the best of circumstances. But, Em was able to all they asked of her and the second session even included turning on the jets to up the difficulty. Last year, she fell asleep before we drove out of town after each session and this week she walked (WALKED!!!) into the bookstore with me after therapy. I don’t know how many sessions we will be able to squeeze out of this injury, but I am pleased so far!

So, in pretty much every area of concern, we have seen improvement. Considering where we were this time last year or even a couple months ago, this is nothing short of amazing. I cannot tell you how thankful I am for the blessings we have. She will always have EDS and it will always be challenging but we are managing it now, with the help of the correct treatments and the assistance of some wonderful medical folks.

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Em has been on neurontin for a week now and even the lowest dose is helping control her pain significantly. Her pain without the medicine is typically about a 7 on the pain scale and with the medicine, it is about a 2 or 3. That is pretty significant. Very significant, actually. The biggest problem she is having is that it wears off before it is time for the next dose. She is supposed to take it at least 6 hours apart but it starts wearing off at the 5 hour mark most of the time. When it wears off, she definitely knows it.

I don’t know how much increasing the dose is going to help that but it is good that she is getting significant pain relief from such a small dose. (As much as I am a believer in better living through pharmaceuticals, I would not be upset if we can avoid high doses of this kind of medication.) Also good, so far there are no noticeable side effects. Maybe they will appear at higher doses but so far so good.

I am supposed to call tomorrow to give the pain clinic an update and we will probably bump up the dose a bit.

At any rate, the neurontin is working and that is a huge blessing for a kid who has been in pain for so long!

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We have started the mast cell treatment yesterday – Zyrtec and Zantac. On our own, of course, since I have yet to find a doctor who will even let me ask to try it. So, I figured my best option was to present them with a done deal – it is easier to ask forgiveness, than to get permission! And, since this is over-the-counter, I feel perfectly safe to try it without medical supervision. If it helps, that will be the ‘proof’ we need to stay on it and it, theoretically, should help bolster our request for Diamox -since they are each part of the theory and treatment. If it doesn’t help then, obviously, she shouldn’t stay on it.

Yesterday, she took both medications when she got up. By 3 o’clock, she said she wasn’t itchy at all and she thought the weird rashy/hivey spots that she gets regularly were gone. Her dizzyness was less and her headache even seemed better. Her stomach was hurting much less and the nausea was less as well. She actually asked for a meal – turkey, mashed potatoes & gravy, macaroni and cheese. Oh, and brussel sprouts. Before all of the neurological symptoms, she was an excellent eater and loved things like broccoli and brussel sprouts. (Yes, she is strange!)

Anyway, she ate and ate some more. Not only was this the first time in months that she requested an actual meal, but it was the first time in a very long time that she had seconds – usually, she pushes her plate away before her food is half gone – everything she eats hurts her stomach. So, we felt that the mast cell treatment was going swimmingly. Unfortunately, her stomach wasn’t quite ready for all of that food and she felt awful after eating so well. Two steps forward and one step back.

I am still very encouraged by what small improvements we have seen after even one day and fully expect that after a couple weeks, there will be substantial improvement. I had printed off a list of her symptoms – both mast cell and neurological – and asked her to note any changes each day. 19 symptoms had reduced from her normal daily level and 16 had stayed the same, after one treatment. I am very optimistic.

On the amitriptyline front… Since the evil neurologist told us to gradually increase it to 62.5 mgs and we ended up having to fill that prescription, we have decided to use this opportunity to increase her dose beyond what the pain clinic has prescribed. If we get to a ‘good’ dose, we can halt there and talk to the pain clinic about it on the 14th. Honestly, we are kind of stuck since the new 25 mg prescription makes the old 10 mg prescription obsolete. It is better to use what we have to gradually increase the dose than to be stuck suddenly taking an increased dose when the old script runs out. We have increased it to 35 from 30 and may bump up to 45 next week. Better that than 30 mgs to 50 mgs, over night.

I am feeling that we are approaching a good dosage, but that is muddled by the fact that she is taking benedryl at night and that definitely helps her sleep. Once we really get going with the mast cell treatment, I hope she can not take the benedryl a few nights to allow us to determine which med is actually helping her sleep.

Her sleep schedule has definitely improved over the last couple weeks but I don’t know if that is due to the ami or the benedryl or a complete coincidence. She is falling asleep around midnight, sleeping through the night and waking up on her own around noon – and sometimes even earlier. This is a huge improvement. Of course, last night, she was awake until 4 am but hopefully that was an anomaly and not an end of a good run. It could be the Zyrtec or it could be just one of those nights. Will have to keep an eye on her. Hopefully, she tolerates the Zyrtec well and it doesn’t create more side effects!

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Em’s condition has improved slightly, but she is still not doing well.

She went to co-op on Friday for a couple hours. I know she needed to get out of the house and see her friends and feel like she has a life, but even a couple hours was too much. She slept very little Thursday night and was exhausted all day. She managed though, so I guess she got a little benefit out of it. She did pay for it – she felt absolutely awful Friday evening. Fell asleep at 8 and slept through til 5:30.

Since Friday, she has been eating and sleeping more normally. The nausea has reduced some so she can eat without the nausea being unbearable afterwards. And she is sleeping more at night and less during the day. The headache and neck pain are still bad. And she is having hiccups frequently. Apparently, hiccups can be a symptom of Chiari, so I don’t know if it means anything or if it is a coincidence.

Not sure if she is really better or if she is just having a couple good days. Even when the good days are few and far between, we take them gladly. Any reduction of the pain is a good thing. But, as usual, I am waiting for the shoe to drop. We just need to make it until the 14th…

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Finally heard from the doctor late yesterday afternoon. The conversation went like this:

Nurse: “The MRI is normal. There is a small cyst but it is nothing of concern. So, yeah. Everything is ok.”

Me: ” Ok, but she is not doing well at all and is getting worse. Can he refer us to a neurologist or something?”

Nurse: “What are her symptoms?”

Me: (Thinking, exactly the same as I told you one week ago except worse) ” Massive, horrible headache – her head feels like it is going to explode; dizzy, lightheaded, nauseated to the point of not being able to eat, pins and needles in her feet. Extremely light and noise sensitive. She is spending her days in a darkened room because her head hurts so bad. We have to do something…”

Nurse: ” I will talk to him and call you right back.”

I am trying really hard to not be angry but I am steadily simmering at this point. How dare they ignore symptoms that are potentially serious and tell us everything is fine? What do we have to do to make them understand how bad it is? Does she have to be neurologically impaired before they do something?

She cried yesterday when I woke her up to go to her OT appointment. Sobbed in agony. She doesn’t cry. In the year and a half since she dislocated her knee, I can count on one hand the number of times she has cried. She didn’t even cry when she dislocated her knee – she looked at it and knew something was wrong and popped it back in without shedding a tear. Her teacher didn’t know anything had happened until Emily told her, after trying to continue with class! Then she walked over to me to tell me she needed to go home. She does not cry easily. But she sobbed yesterday, saying she just couldn’t do it. I am actually worried about her mental health. I have heard stories about people attempting suicide to get away from the pain of certain types of headaches and that scares me. The pain she is in is unbelievable and she gets no relief.

How can it possibly be better for her to be in endless pain than to give her something to relieve her pain?

So, the nurse called back an hour and a half later to ask if we could talk to Dr Tinkle on the the 14th because the Reid neurologist was going to be leaving and it would be complicated. I tried to explain what I thought was going on and she said she would try to get us an appointment and would call in the morning.

At 8:45 she calls to let me know we have an appointment on the 15th at 8:30 – a day after we go to Cincy. It is better than nothing but still not great. So, now I guess we wait. If Em gets too bad, I guess we could call and try to get a quicker appointment or head to the ER. Maybe Dr Tinkle will take her symptoms seriously and move us forward. Somebody has to, before she slips away entirely.

(Note to self: Andrew took her pulse and BP when we stopped in to see him yesterday after the OT appt. Her ox level was 100; pulse jumped around from 80 to 97 while she was just sitting. Her BP was 97/58, pulse 84. This BP reading was lower than normal. This seems to support my theory because if her brain stem is being compressed, it can cause BP to be low, in addition to POTS symptoms.)

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Watching someone you love suffer is one of the hardest things you can ever experience. My daughter may disagree with that statement: as the one I watch suffering, she would probably say that suffering yourself is no picnic! However my mother’s heart breaks everyday as I watch my precious twelve year old daughter suffer day in and day out with Ehlers Danlos Syndrome.

Unfortunately, my son and husband also have it, so I fret over them as well, imagining the worst. My son, fifteen years old, really is not affected much by the condition – except he has this hanging over his head like a black cloud. At any point, it could become an issue in his life. My husband, approaching forty, has an abundance of aches and pains and injuries that we can now attribute to EDS but so far is not seriously debilitated by it, thank God.

My daughter, on the other hand, is affected fairly seriously – she is on crutches or in a wheelchair much of the time; she cannot cut her own food. She was a gymnast and that has been taken away from her. She dislocates or subluxes most of her joints, many times a day, every day. Each injury adds to the cumulative damage being done to her joints and likely will result in arthritis at an early age.

Her autonomic system is also affected – her pulse runs high even at rest, then will accelerate significantly when she stands up. This causes black outs, dizziness, nausea, headache, tightness in the chest, and extreme fatigue. Some days she can’t even sit up. A host of other medical problems can be caused by EDS, so I watch her like a hawk, hoping nothing else pops up.

We try to keep a positive attitude but we do have our ‘Why Me? Why Her? Why Us?’ days – hence the title of this blog. It is a nod to my love of Shakespeare and it is a phrase that has popped into my mind more than once while dealing with all of this.

‘Suffering the slings and arrows of outrageous fortune’ , in other words, dealing with all the rotten stuff that life can throw at us. There are days that I ask “Why us?” But the answer to that question is another question. As my husband says, “Why not us?” We aren’t special or immune to suffering. There are so many awful things that can happen to people – particularly genetic conditions – that can ruin and destroy lives; EDS is definitely on the list of rotten things, but there is much, much worse higher up on that list.

EDS will not kill my loved ones and I am forever grateful for that. Everyone has a burden to bear as they journey through life, some suffering to endure on their way. Into every life a little rain must fall. Clichés, perhaps, but the funny thing about clichés is that they are true!

This is our burden. It is a heavy one, but with the support of family and friends and the mercy of God we will not only endure this, we will thrive. There are blessings that come with suffering. It is early days yet for us, but I already see some good. One good thing is the opportunity to educate about EDS. The earlier the diagnosis, the better the outcome, so I will do my best to spread the word about EDS in the hope it could make the life of one person better.

I have thought about creating a blog for awhile, but didn’t really think I had anything to add to the conversation. Still really don’t, but I do know that I have benefited enormously from information I have found online – forums, web sites, and blogs – and want to make a small, inconsequential contribution to the search for information. At the least, I want to keep this blog as a record of our experience – our search for answers. We have a ways to go in our journey and I want to record it for my own benefit, in the hope I can look back in better days with an appreciation of the blessings we have been given.

If it helps anyone else, in the smallest way, that would be icing on the cake.

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Welcome!

Thanks for visiting my blog where I chronicle 'Our Life with Ehlers Danlos Syndrome'. I am sharing my family's journey with EDS (and everything that goes along with it) in the hope that our experiences will help someone else.

Go to Our Story to read about the early days of our EDS journey. Or click here to go to the first post of this blog, if you would like to start at the beginning.

Take a look around - I hope you learn something that is helpful in your own journey! While you are here, I would love it if you left a comment telling me about yourself. Feel free to contact me if you have any suggestions about what you would like to see on this blog!

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